2010 has been good to the Levetzow family - for the most part. The summer brought some changes in Eden's chemo regimen as her blood counts were often unfavorably low. She was often having weekly blood draws and we spent more time at home than intended, due to netropenia Eden spent 8 days in the hospital the beginning of August but since that stay she had returned to our healthy little girl. We have said to many, the month of September has been the best month since Eden began treatment in January of 2009. Eden has started attending preschool three mornings a week and she loves all of her friends. She loves being outside swinging and cruising the side streets of Washington on her Strider Bike.
We were reminded of the reality of Eden's health on the morning of October 26, Eden woke up with a fever. We were admitted to the hospital in Iowa City that morning. The nurses accessed her port and they ran blood cultures before starting antibiotics. Eden was lethargic most of the day. She only spoke a few words. She knew we were taking her to the hospital and the only question she asked was will they let me lay down? When we arrived on the floor she was greeted by our nurse and she said, "I don't want a pokey thing!"
The blood culture that was drawn when we arrived came back positive so she was started on a second antibiotic. The infection was controlled by the antibiotic as her fever subsided and only the first blood culture came back positive. The protocol for a positive culture is 7 days inpatient and 10 days of IV antibiotics following the first negative culture. The infection caused Eden hemoglobin to plummet and for the first time in over a year Eden received a blood transfusion. It is amazing how fast a little blood can perk a little one up.
Eden has not wanted to participate in many of the planned activities that the hospital and the Dance Marathon Volunteers offers. She has requested to go home more than normal. She is enjoying her life at home and being hooked up to an IV pole has interfered with her agenda. Today, Eden was able to be unhooked from her IV pole and she was able to ride her little bike through the halls of this amazing hospital. It was much better than the game of hide and seek we were playing with Eden hooked up to an IV pole. Today was good - Eden's smile can overshadow the location any day.
With Eden's best interest pretty much the only thing on our minds, the week has went by fairly quick. Although, we had intended on cheering on the Cyclones via Jack Trice we were thrilled with a win even in our absence. From our room, we could hear the crowd cheering the Hawks on to a great win - we were even cheering for the Hawks.
Eden's port has caused some discomfort and problems this visit. Tonight Eden's port would flush (allow fluids in) but would not draw (allow blood to be pulled back out). So after much despair and several attempts at getting the port to draw blood, the decision was made to re-access the port. This is upsetting to Eden. So we had the port removed, got a good soaking bath without having to protect an accessed port from the bath water, and finally had the port re-accessed. We all had our fingers crossed that the blood would draw - but it wouldn't. We were all extremely bummed and even had the nurses scratching their heads. It would flush really well, but wouldn't draw. So they tried several nursing tricks without success. So for the first time in 22 months it was necessary to administer TPN to dissolve a potential clot in her port. Finally around midnight Eden had a fully functioning port.
The plan is that by Tuesday, we should be getting discharged. We'll be very excited to get home and back into our routine. Eden misses her classmates and teachers - she has told several nurses about Mrs C & Mrs Warren. We are looking forward to some bike rides without limitations of halls, sleep without interruption and just life outside of the hospital.
We're sorry we haven't kept you all updated, but honestly, there's only so much to tell - since she's done so well.
Thanks to all of you out there who have expressed to us that you keep Eden in your prayers, and same to all of those out there that we don't even know about who are praying for her little body to heal.
Sunday, October 31, 2010
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